Reviewing My New Custom Chair
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- Опубліковано 14 жов 2024
- #wheelchair #blind #lifestyle
Let's finally talk about my new wheelchair. Why I use one as a blind person, How I got here, and what it truly costs. This custom $14000 chair has changed my life for the better, there is no doubt, but what does it do that costs that much? Let's find out!
PS If you know any blind wheelchair users, please hit me up down below or in my DMs. I am in desperate need for some advice on how to use this wheelchair safely. Cheers!
Thumbnail Description: Tamara smiling as she pushes her sleek purple, black, and white wheelchair in one hand and her pink white cane in the other. A large red $$$ price tag sits on the back. Text Reads Blind (pointing at her cane) Wheelchair (pointing at the chair).
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Lumix G7
I have been a legally blind and partially deaf ambulatory wheelchair user for the last 6 years since having a stroke. My first chair was a TiLite Aero X with a Smart Drive, I had a lot of issues with the smart drive due not having a lot of feeling in my hand, we eventually got the Alber wheels with a joystick. I just got my second chair delivered today and it is a TiLite ZRA with the new smart drive controlled by the dial.
I just replaced my chair with a TiLite Aero Z. I'm loving it so far!
Hi! I’m a deaf-blind wheelchair user. I use a permobile m1 electric wheelchair and I use my NFB white cane for the blind and I always take my folding cane with me as well. I’m up for a new chair evaluation in a couple of days to choose a new chair. I’m excited and I think I will ask about the set up you have since I would rather have a manual chair and a drive assist. I used to have a smart drive but it was an older model with a few issues. Anyway feel free to chat with me about anything wheelchair and blindness related. I have my full independence and love life now that I can get around safely and efficiently. Great video!!
I hope your chair assessment went well. Always delighted to meet and be acquainted with a fellow blind wheelchair user. :)
I have EDS. I’m losing my vision and hearing. I’ve used a wheelchair for over 2 1/2 years. I also have a service dog. I found your videos because of the one you made on braille punctuation but so glad I watched this one. I’ve been feeling very alone lately in my disabilities.
Check out my common I just left for more info but also Blind with EDS. Among a crap ton of other issues.
I'm a deafblind wheelchair user moving manually with my legs although the amount of distance I can travel at one time is very small. This at least keeps my hands free for white cane use. I have a long list of health problems that has been slowly growing. I also have had problems since 2018 with losing consciousness unexpectedly (a lot!) resulting in a lot of injuries which led me to moving from using a hemi-walker to using a wheelchair. I'd be happy to chat with you if you'd like. Emails are the easiest with a braille display. I'm still learning as I go and occasionally leaving a few scratches in walls when I lose track of my bearings.
Thanks for reaching out Tony! I definitely tried pushing myself around with my feet, but ended up running over them multiple times At which point my OT told me not to. Any tips for someone who can’t use their feet to propel? Or how to not run over your own feet lol 😂
@@UnsightlyOpinions Unfortunately, I run over my feet from time to time as well but this is usually when I'm trying to turn around. I find the rolling backwards a few inches first lets you know where the front wheels should be so you can keep your feet out of the way... usually. ;)
@@UnsightlyOpinions Not sure how long I'll be able to keep up with manually pushing myself around but I intend to keep it up until I can't. It just doesn't feel good having to ask people to push me anywhere when I'm having a bad day with neuropathy, joint pain and stiffness, and vertigo all at once. Besides, I don't know how anyone else affords all the expenses with a motorized wheelchair either. I did have to get anti-tippers added to my wheelchair after rolling it twice iin one week and luckily avoided cracking my head open like an egg. lol
@@UnsightlyOpinions
I am a blind wheelchair user.
One of the reasons you might be having trouble pushing with your feet is that, usually if a person pushes with their feet, their chair is prescribed with that in mind and the seat is lower to the ground.
Your wheelchair looks so cool I love the purple. who says mobility device can't look boss. I'm not not blind or a wheelchairs user so I can't help you but if I see anyone online I will let you know. Thanks Tamara you have made my day just a bit better 💜
Thanks so much Cosmic Goat! It as a long journey to get here, but I'm glad I've finally arrived and it feels like mine. :)
@@UnsightlyOpinions 💜
@@UnsightlyOpinions
I use a Ki Mobility manual wheelchair and have the same purple as you do. 😊
My suggestion is get the 64"fiberglass cane. I use a chair on occasion, and I use this really long cane with biggest marshmallow tip, or ball. but not in the traditional way in front of me. I rest my arm on the armrest with my free hand. I hold the cane between my index finger and thumb (pencil)Literally letting the cane bounce between the fingers, so the cane is doing the work. I use my other hand on the joystick. The cane slides up and down when it hits a ruff spot. Make sure to have a second handle put on the cane about 6"-10" down the side. The second handle should be large enough to put your arm through without binding so the cane can move smoothly. The extra length is held in your hand (do not put your arm in it). Sweep will be different from side to side. Short sweep left long sweep right. It takes practice and you will probably adjust the handle several times before you find the tolerated zone. I hope some of this makes sense.
Thanks so much for the suggestion. I’ve been experimenting more and more and your advice has definitely helped! Thanks!
I will share your site and ask my doctors about patients with blind wheelchairs. I am due for an eye appointments. I'm sure doctors will share your site. We are alone. I can still see. You are a blessing to help people with different sight problems. To prepare in case of full blindness. Thank you so much.
Oh my God, I just found your channel. Aside from being a guy and the fact that obviously we probably don't have all the same conditions and not the same number, it does seem like we have overlapping conditions. I am also blind with connective tissue disorder, a type of arthritis and probably POTS among Host of other problems that make me think I'm not gonna be able to go without wheelchair for much longer for part-time use at least. All of my conditions recently got worse because I got Covid in mid July. Thankfully being immune compromised I got through the actual covid OK but my chronic illnesses I've gotten significantly worse with pain, inflammation and instability with things coming out of place much more frequently and with more severity. I am so glad I found your channel because I have been concerned about becoming a wheelchair user while Blind. I'm hoping to be able to go to Colorado center for the Blind at some point and wondering if they can help with teaching me cane skills that are specific for wheel to user because I heard that insurance companies are more likely to pay for a wheelchair if the blind individual has the cane skills when using a wheelchair. I haven't fully watched the video yet but I just want to say thank you thank you thank you for making this video.
It sounds like there is a lot of overlap. While it isn’t the easiest thing to do blind, I’ve found a way to make it work, so I’m sure with some training you’ll get there too! :)
I love your new chair 😍
Thanks for another great video. I wish it was easier to find content by people with multiple disabilities, especially considering how common it is for people with one disability to develop others over time. Thank you so much for being the change, I hope more people will share their experiences in the future.
Thanks Emily! Your support means a lot!
I’m a blind wheelchair user
I’m glad u made this video as I’ve not been able to go out unaided for years
Now I feel less alone
Hey Jay-leigh! the feeling is entirely mutual. It's lovely to meet a fellow blind wheelchair user. I'm still working at it but I will definitely share more about independent travel with wheelchair in the near future. :) Hopefully it can help both of us regain our independence!
@@UnsightlyOpinions look forward to it
OMG the wheels are the best!! Winter tires too, sweet!
i just had my wheelchair evaluation and picked out all the bells and whistles, just waiting for insurance to (HOPEFULLYYYY) cover it, but i'm double insured so i'm trying to be confident! it is so interesting seeing how different chairs are built for every single person! i absolutely hated having a dump at all in my chair and it's eye opening to see how it could be a necessity for someone else! i'm so glad you're learning to love your chair and getting around in it, i cannot wait for mine too!
Having used it for so long now, I would probably go for something with a slightly less aggressive dump next time. I hope insurance comes through and your chair turns out beautiful!
The flip back foot plate is an amazing idea, i finally can dump my uncomfortable folding chair and use a rigid one. Thanks so much
This is so useful! Thank you for explaining what and why you got each element! I'm looking at getting a wheelchair and I really want to have an idea of what would be ideal, what I could accept, and what I actively don't want, so I can effectively communicate.
My pleasure! I felt exactly the same way before getting mine, but couldn’t find many resources for my particular questions. There are definitely things I would change on my next chair but they are mostly small tweaks like going for an even lighter frame, and a deeper back rest.
your channel is so unique and valuable and much needed ..
Thank you!
I'm a vision impaired wheelchair user too. Thank you so much for making this video. Personally I use my feet like 2 white canes sweeping in front of me, although it wouldn't work for nonambulatory wheelies
Interesting technique! Thanks for sharing Marie, I don't know if it would work for me, but I will definitely experiment and see how it goes. I've found myself running over my feet repeatedly already without doing that yet... so we'll see :)
Love this video!! Treva Olivero is my go-to for questions about using a wheelchair plus a cane or dog. She’s in the US, but she’s a great resource and can probably connect you to a bunch of other blind wheelchair users. She’s extremely well connected with the NFB of Louisiana which is another good resource to call for that question. You can also reach out to the Louisiana Center for the Blind, and they should also still be able to give you a lot of information over the phone since you’re in Canada.
Thank you! I will try to connect with Treva!
Thank you so much for this post! I have been quite despondent at rising to the challenge of thriving with both sensory and mobility disabilities.. I am a tyrosinos positive albino and living with a neurological disorder that impairs my mobility. I used 2 canes, then a walker and dreaded being "housebound when I couldn't walk anymore. Now I know that there are more skill levels to master. Yay!
Definitely. The more I experience of life, I realize it may not be easy but there is always a way to adapt. And with enough creativity we'll all find a way to create independence. :)
I have been using a wheelchair since college, before that I was on crutches. I destroyed my joints trying to walk and then push a chair. I am using a $35,000 Permobil with modified seating , I have my self trained working dog Marley and sometimes use my white cane. I know you’re problem finding others who are wheelers, ther is a group called Blind Rollers, they talk about their experiences and other things. I’m so busy surviving I don’t always get to talk to others, contact me would love to talk to another person who is learning the rolling world.
Thanks for the suggestion! I will check out the group. Is it on Facebook? I'm always looking to chat with others who have a similar experience. Feel free to reach out. My e-mail is in my description. Won't let me post it here.
I did not get OT to help with my manual chair purchase. I also didn’t know I have a connective tissue disorder when I got it. I trashed my shoulders pushing myself. PT helped me relearn to walk at that point. In the US with Medicare there’s a vision requirement for powered mobility aids so I’m so glad I was able to relearn to walk. I honestly don’t know what I will do if I have to stop walking in public.
When I was much younger (like over 20 years ago) I met 3 different blind chair users. I think I met them all through NFB conventions or the Colorado center.
I’m so sorry you had to trash yourself using a heavy chair! That’s so frustrating! You would think that they would understand that people with visual impairments or blindness who need wheelchairs are going to need powered mobility aids to be able to get around independently. That is so ridiculous. Thanks for letting me know they are out there, I will inquire with the NFB to see if I can get in touch with anyone.
@@UnsightlyOpinions I needed a heavy duty chair because of my weight. But, I really should have gotten the help of an OT.
Hey Tamera! You keep blowing my mind with your awesome attitude. You are fearless when confronted with barriers both physical and otherwise. Keep doin what you’re doin .👍
Thanks Dennis! Your words of encouragement are touching. :)
I never realized the options out there for wheel chair users! They think of everything! Where is your cup holder? Great video!
Cup holder comes in the next vid! Haha
Thanks so much for making this video I've been waiting to hear more about your chair use and how you make it work. I came at blindness and wheelchairs from the other direction, I was a wheelchair user (EDS and balance and lots of falls) with most of my of vision until 2020 when I lost enough to be legally blind. I still have some useable vision but can't see cracks or similarly coloured obstacles and other things I was used to replying on for wheeling around the world. I am currently learning to pause (I use a manual and have a Smart Drive) and use my (new) cane to investigate curbs and stuff before continuing on, its a solidly middling system but I'm also just starting to leave the house again (damaged immune system I've been isolating most of the last 2 1/2 years) so I haven't gotten to try much else yet. I'm not sure how much help I have to offer but I'd love to talk to you if that's something you'd like. I see your email in another reply thread, just let me know if you'd like me to email you. Of course I'm also happy to just watch the videos as well. This one was really interesting to see and I look forward to more of your wheelchair adventures which I'm definitely watching to learn from as well.
Thanks for reaching out BeeB Absolutely you can reach out by email. I’d be happy to chat and take any advice you can offer :)
Awesome! I emailed you 😊
I'm a little late to this video, but I am a young wheelchair user that has acquired a moderate-severe vision loss over the past year and has had to start using a white cane to not accidentally roll off curbs and such. This video gives me a lot of hope that I will be able to learn how to use the white cane well in my chair and gain back some independence. I want to ask, how hard has adjusting your orientation and mobility skills to your wheelchair been? Do you feel like you've made any major progress and are able to navigate as safely as while walking?
That sounds like a lot to be dealing with. I hope you have access to everything you need to help adapt. I would say that at this point, I'm getting a lot more confident. It's been a tremendous learning curve compared to how I walk. Lots more gut jabs, and a little slower, but for the most part, I feel pretty safe. Interiors I would say are 100% and the only challenge I'm still working on is knowing if the up curb is going to be enough to stop my chair or if I can power through. I suppose that will evolve with time. Best of luck on your continuing journey, and let me know if you come up with any awesome tips/tricks. :)
@@UnsightlyOpinions
I use a power chair, I definitely got a longer white cane after training at the center for the blind. I have been working with one of the agency cane travel teachers since July of 2023. There is no charge for these services in my state in the U.S.
I know that through certain med-assistance programs: "medicaid", etc. one can generally get one wheelchair every 5 years. Usually, it is the most basic, most uncomfortable chair you can imagine. However, one can generally make some modifications. But, you are right, you spend the majority of your time searching for what you need, then getting the run-around from insurance companies and doctors' offices. I wish these people needed wheelchairs so that they would understand!
Congrats on the new chair! I love the purple accents. My eyes literally bugged out at the cost of your cushions. I know ultralight frames for bikes are pricy so the chair itself didn’t shock me too much but the cushions?! Ouch. I haven’t run across any other wheelchair users that use a cane or guide dog yet myself, but I’ll keep an eye out and try to connect you if I do.
Thanks Chrissy! I'm really happy with the colour. It feels so much more personal than black or grey which scream medical and sterile to me on a wheelchair. It was shocking to me as well, and these cushions were on the low-end! I have no idea how people afford new chairs every 5 years and new cushions every 2 years.
Im still waiting for my powerchair assessment its seeming like itll take years so currently i use a manual chair, I am also now getting a white cane because i honestly really need one but still dont know how to use it with my wheelchair
I'll be chatting about how it all works soon! Stay tuned. :) And ugh boy do I know how frustrating and long the process can be go get seating assessments. Mine took over 2 years!
Hi Tamara, what a lovely designed, beautiful purple, wheel chair, how do you manage a wheel chair?, as always, so amazing. Thank you for sharing, and bringing up, some really Good points.
Kind regards Tony from Scandinavia
If they can put "lane assist" in cars to keep them within their respective lanes, can they do the same for wheelchairs: To keep them between the margins of a sidewalk, etc.?
I’m vision impaired and I use a wheelchair as well also!
Hi Larry! Any tips on how to manage the cane/dog and chair you think would be helpful to a noobie?
@@UnsightlyOpinions I’m not sure!
REVIEWING YOUR CUSTOM WWHEELCHAIR IMPRESSIVE 👍👍👍🦽🦽🦽
You got this girl.
Thanks Afron!
Hi there, fellow Canadian wheel person! Just curious what province you live in and what the grants and assistance you got was? If you don't mind sharing of course!
I’m an Albertan and took advantage of the AADL grants :)
@@UnsightlyOpinions Awesome! I'm already set up for AADL! Yay alberta!
Honestly looking at the comments of this video, I wish there was a Facebook group that we could all join to discuss being blind as well as chronically ill and wheelchair users
I've got EDS and my wife is blind. Kinda close! Haha.
very close haha
I personally don’t know any other blind wheelchair users, but have you tried asking in the guide dog handlers network on Facebook? Or maybe somewhere on NFB? I can ask around a bit, I’m sure there must be people!
I did ask on the blind fb groups but don’t have any connections at NFB. If you could, that would be amazing! 💜
How/where did you get the ToDo? It seems to be Korean or Australian. I'm in the US.
It's a South Korean company that manufacturers it. I ended up becoming a distributor for Canada since the only other company bringing it it wanted an exorbitant amount for it. So short answer is I am technically selling them, although I have no idea what the import laws are for this kind of device into the US.
@@UnsightlyOpinions Well, how much are you selling them for in Canada? Might be worth the trip, lol.
@@dancingpianofairy $3150 CAD. That’s the lowest I can get it imported at.
@@UnsightlyOpinions That's still a third of the price of what I can get here, plus it weighs a whole lot less, and doesn't impede manual use. I will totally look into import/export, see what needs to be considered.
I am a wheelchair user, as well as have a visual impairment.
Hi Cole! Thanks for commenting and reaching out! May I ask a few questions?
@@UnsightlyOpinions Of course!
Let me know how I can help.
@@TheMassie97 Thank you! First one, are you a non-mobility device wheelchair user, cane user or guide dog user or all of the above? Might change some of my questions. :-) How do you manage navigating doorways with a wheelchair? I seem to be OK with powered doors, but non-power doors are a nightmare.
@@UnsightlyOpinions That is a very long answer that might well extend beyond the literary capabilities of a single comment. If you're comfortable, can we start a Zoom meeting? If not, I can always separate the answer into two comments.
Can you use your Guide dog and your wheelchair?
Yes I can :) video coming hopefully soon.
Is Patience still a guide dog? /genuine question
Yes she is. I just can't show her guiding in a video yet. :)
@@UnsightlyOpinions oh cool! I’ve wondered what would happen if a guide dog has to guide someone in a wheelchair.
They train them to do it.
@@UnsightlyOpinions
There is a guide dog school in Florida that trains the dogs to guide for people who use chairs
Did you post on r/blind on Reddit yet?
I have :)
dont kmow if you will get this but did not know how to get a message to you-you have been so quite are you doing ok?
Hey! Sorry I’ve had a lot of life and health stuff going on behind the scenes and it was keeping me from uploading. I should be relatively back to my usual uploading now. :)
im a deafblind youtuber in powerwheel chair do to mnd and myopthy
Any tips for a newbie?
@@UnsightlyOpinions Definitely make sure you ask for accommodations wherever you need to be . And not to get to bold on pavement that isn't steady as well as keep your chair working and up to date .
This is very informative. I do know a few blind wheelchair users who use canes with manual and power chairs. You may already know them but can connect you if you're ever interested. One thing they do is use a much longer cane. I've also done some intro travel work with a kiddo who was learning to use a cane and a wheelchair. Feel free to reach out here or friend me on Facebook.
If you're comfortable giving your email, that would be great!
UnsightlyOpinion@gmail.com
Opinion is singular not plural :)
@@UnsightlyOpinions I'm sorry, what's your email?